Monday, April 2, 2012

Day two of Cushing's awareness

Anyone who knows me knows that I am an avid Tori Amos fan.  My blog name is a reference to a Tori song as is the title.  Years ago I frequented a Tori Amos online community.  They had an other interesting topics discussion area and someone brought up the question of "Why are you fat?"  I remember sitting there absolutely perplexed and trying to decide how to answer.  I replied that I honestly didn't know.  I was active, I enjoyed riding bikes, camping, hiking, swimming and just being alive and I was not someone who ate to control my emotions, nor was I eating the wrong things.  Little did I know that this question asked in an online Tori Amos community would eventually be what led me to the path to save my life.

A girl in this community sent me a private message and asked me if I had ever heard of a disease called Cushing's Syndrome.  I told her I had not.  She asked me to look it up and get back with her.  I looked it up through a search engine. What I started reading has forever changed my life.  This was me.  At that precise moment I knew I had this disease and NO ONE was going to tell me I didn't.  This of course was before I had ever encountered Doctor's who would scoff at me and tell me I was just depressed, overweight and needed a better exercise plan.  It was also around that time that I found the website.  This website saved my life and without the information that Mary O puts out there, I would be just as lost as I was back in 1999.  The friend that I spoke with in the online community had steroid induced Cushing's from her asthma inhaler.  She said she backed off those specific types of medications and got better.  Of course, I was not on any steroid medications or inhalers so I knew what I was dealing with was going to be that much more of a struggle.

I made an appointment to see my regular Doctor.  I explained that I was pretty sure that I had Cushing's Disease.  My Striae aka stretch marks were not wide enough, red or purple enough for me to possibly have this disease.  He looked at me like I was nuts, but agreed to do the 24 hour urine free cortisol test.  With this test you dump your first morning pee at 8 A.M. and then collect the rest up until 8 A.M. the following day.  You store it in a lovely brown jug in the fridge.  This test came back normal as far as I can recall, but I was sure I had this disease and I wasn't going to back down.  I ended up seeing another doctor in the same office who took me a little more seriously. She sent me to an Endocrinologist out of town and he also agreed that I looked like I could have Cushing's, but the blood work and 24 hour UFC's (Urine Free Cortisol) came back normal as far as I can recall as well.  I remember sitting there before him pleading to make sure he checked every avenue to rule this disease out.  I was in tears simply because I knew I had this and that I had to prove to someone I was sick in order to get help.  The next appointment he pulls out these weight loss shakes that would give me a whopping 900 calories per day.  I was so frustrated and angry, but I agreed to do it.  The best part was I still managed to gain weight while on this stupid shake diet!  I decided I was done with him and it was time to find someone else who would take me seriously.

I went back to my regular Doctor and asked for a new referral.  This time I was directed to an Endocrinologist who did believe something was wrong, but I think he knew I was going to be beyond his expertise right off the bat, but he agreed to work with me.  Over the course of being his patient I managed to get at least 5 high 24 hour UFC's, my 8 am blood cortisol serum levels were always low, and my ACTH seemed to be fine.  I always suppressed on the low dexamethasone suppression tests, my 11pm salivary cortisol tests always came back normal as well.  He had two different brain MRI's done and zoomed in on my pituitary, but those came back normal.  I had no idea that an open MRI was not the greatest machine to be used, nor did I have a reason to expect the radiologists to not be able to read them properly.

It was decided that if I had Cushing's I had it on a cycle.  The issue is trying to figure out when I was cycling and to understand and be able to read the signs. To this day, I STILL have not got it completely figured out.  I've had tests come back low when I was sure I was cycling and then when I thought I was low they came back high.  He decided  I was beyond his expertise and he felt that the Mayo Clinic in Rochester, MN should evaluate me.  I agreed this seemed to be a good next step.  I will continue more tomorrow with my journey to present day.

Later today my current and forever Endocrinologist Dr. Theodore Friedman will be doing a live blogtalkradio show.  Anyone can call in and ask questions to Dr. Friedman personally.  He is such a wealth of information and listening to these shows is such a valuable source of information.  He truly is "The Wizard" in this field.  Hands down.  I trust this man with my life.


  1. It's interesting how you talk about having it your whole life. It really does make you wonder. I have yet to decide if I always have. When I was a kid I had heartburn a lot and infections and "food allergies". All three girls got their tonsils out. I don't know, but it seems genetic so maybe so.

    My endo thought I might have to go to the Mayo, too. Then we found the tumor on my adrenal. We pressed him for the CT scan though. I don't know what he was thinking. The cycle Cushing's sounds complicated. I wonder if my sister may have that. Can your 24-hour urine be normal with that? She's tested high for blood Cortisol in the past! I can't imagine it was all stress and birth control alone...

    Very interesting and detailed story!

  2. You can definitely have a normal 24 hour urine if you are cyclical. I have had many, many normal ones. The reason it is so hard to catch cyclical is because the majority of us only excrete too much cortisol late at night when everyone else's cortisol numbers usually bottom out to almost zero, then in the morning we would crash when the rest of the world was waking up with higher numbers. So in essence, you basically cancel the 24 hour out because you are high at the wrong time, but sometimes it is elevated enough to make a difference. Dr. Friedman has many tests set up that are meant to catch the late night highs.

    The horrible heartburn started for me at the age of around 18. It was and still is horrendous. Increased cortisol levels can create the stomach acid issue. I am sorry you have had to deal with this and I'm sorry your sister may be going through this as well. If I can be of any help, please don't hesitate to contact me.

    Thanks for reading my story!

    1. God the heartburn!! Most of my adult I take two Peptacids at night so I can get some sleep AND still, I need a tums in the middle of the night sometimes...I don't even eat spicy food! Any gallbladder issues? Mine was completely seems heartburn got worst after the surgery.

  3. I haven't been diagnosed. In fact, I have been told to stop eating, snacking exercise more and to see a shrink. I found your blog and many of your experiences and symptoms are my own. I see the picture of the Buffalo Hump and tears just come out...I've had that stupid hump for years...even when I was at my thinnest and fittest. My husband wonders about it and my son recently told me to let my hair grow so "your hump" doesn't show...I know something is wrong with me but all the doctors only find one piece of the puzzle and stop once they find one clue. I can't keep telling my family and friends "Tired" "Ok" when they ask how I feel so I say "great!"...I hope like you I get to the bottom of this and get some answers. Thank you for creating this blog and your courage to share with made my day today because I'm not alone, though I feel so...